Once Upon A Gene

As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong.

Society & Culture
Kids & Family
Parenting
326
The Ladies Behind the Edits
ONCE UPON A GENE - EPISODE 034
34 min
327
Loving Large: A Mother's Rare Disease Memoir Wi...
41 min
328
In Loving Memory of Lucas DeFabio
4 min
329
Beyond Quarantine: Acceptance, Empathy, and a B...
35 min
330
Quarantine - What We're Missing, What We're Not...
31 min
331
Trust Your Instincts; An Early Intervention Can...
37 min
332
Put Your Own Oxygen Mask On First
30 min
333
Rare Disease Trailblazer and Co-Founder of Diso...
36 min
334
Therapy Check-In With Rose Reif
38 min
335
How Our Rare Kids Can Shape Us
34 min
336
A Grandfather's Story of Guardianship, Caregivi...
42 min
337
Choosing Hope
33 min
338
Mental Health and Coping During Covid-19
38 min
339
School Closures and FAPE
28 min
340
A Healthier Healthcare For All
40 min
341
Morgan's Wonderland
27 min
342
Neena Nizar and the Jansen's Foundation
37 min
343
Distressed Genes Aren't Just A Fashion Statement
41 min
344
The Value of Genetic Counselors
45 min
345
The Lucky Few
25 min
346
Films and Fatherhood
Daniel DeFabio on Menkes Disease and the Rare Disease Film Festival
38 min
347
A Fellow CTNNB1 Mama
ONCE UPON A GENE - EPISODE 014 A Fellow CTNNB1 Mama Tara Bryant is a special warrior mom who has a young son with CTNNB1 and she's sharing her heartfelt story with us. I connect with her as a mom, going through the same things with CTNNB1, we're both...
24 min
348
Sibling Support
35 min
349
My Favorite Pair of Genes
9 min
350
Rollin' With Spina Bifida
40 min